What you can’t see

I took the kids to have their Christmas pictures done the other night. I’ve taken them to a portrait studio for Christmas pictures every single year since Big Man was a year old and the Princess a small infant. It’s just my thing…..I get pictures done. There are tons of photos of them all over the house.

I posted their silly picture to Facebook yesterday. Everyone was saying what a great photo it was. Here, I’ll let you see for yourselves:

P5

I think the thing about it that everyone loves is that Little Man just looks so happy. What isn’t in the picture, what you can’t see, is that ten minutes before this particular shot was taken, he was on the verge of a full meltdown, and had already kicked the wall twice. What you can’t see in this picture is that the Princess was really pushing back on having pictures done at all, much less the total lameness of Christmas pictures with her siblings, with a color scheme. What you can’t see in this picture is all the sighing and eyeball-rolling that had been going on for over an hour just before this shot was taken. What you can’t see is my stress, frustration, and worry. What you can’t see is me reminding Little Man to NOT make the creepy smiling face the photographer didn’t seem to notice in any of the other shots, like this one:

P3

What you don’t see, most of all, is me struggling to hang onto them being my babies for just one more year, for just a little bit longer. What you can’t see is that no matter what people post on social media, no matter how perfect a photo might make them look, there is life behind that photo. There are meltdowns, attitudes, general mayhem, arguments, sighing, anxiety.

I kind of shook my head at all the comments. How could they not see? I am THANKFUL for the comments. It is a great shot of my Herd. And I do love the photo. I just know everything that happened while obtaining that photo. I don’t mean to sound like a complete Grinch, nor that I can’t accept a compliment on a great photo of my three. That’s not my point at all. It was just a good reminder for me that no matter how amazing the photo, what you see in a snapshot of a single moment, isn’t all there is to the story, for anyone.

And just because I’m a shamelessly proud momma, here’s the one we had printed.

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“You should just be grateful”

I was talking with another preemie mom this morning about our precious gifts, the NICU, how terrifying and devastating and overwhelming it all was. She said that someone had told her, once she brought her daughter home, she should “just be grateful.” What in the ever-lovin? But yes, I’ve heard the same. I should just be grateful – my son is here. He dodged pretty  much all the bullets. He’s amazingly perfectly normal and healthy. Damn right, I’m grateful, every single day. But I’m also sad, heartbroken, guilt-ridden, maybe a tiny bit angry still for all we lost. Don’t ever tell a preemie parent they should just be grateful. You have zero clues.

Seventeen years later, I can still cry over his photos. I can, and do, still frequently cry over all he’s able to do. Every milestone is that much different because I  know very well what could have been, what probably should have been. I pull out his first hat, and am just stunned that it once was too big for him, and my fist barely fits into it. I see his first diapers (clean ones of course) and know they’re the size of a credit card. For real. I remember clearly how it felt to hold two pounds in my hands.

I think about the new mom that I was…..wheeled past the registration desk and all the people waiting in the ER, straight to Labor & Delivery, where I nearly fainted to hear his heartbeat on the monitor, so sure I’d been he was already dead inside of me. I think about all those stats they threw at us each day – his prognosis for survival, then his prognosis for survival without lifelong debilitating disabilities. I think about how much pain I was in, running a 104 degree fever for 16+ hours, knowing there was nothing we could do and that he was safer outside of me. We saw Wonder last weekend. That moment they whisk the baby out of the delivery room, no words said, just silence when there should be joy and laughter and the sound of a newborn crying, I started crying. That’s what it was like. That god-awful silence…..I hate that memory. I hate no one even told us if we had a boy or a girl. I hate that I know how many grams he weighed when he was born (under 1000). I hate that a hospital-grade breast pump was rolled into my room not two hours after giving birth – it became my companion for three months, every two hours. I hate I didn’t even know how to find my son in the NICU when I was finally released. I hate that I went home every night from the NICU to sit by an empty crib….a crib that waited 93 days to be filled.

Don’t tell me I should just be grateful. I am grateful. But I also hurt, I also grieve what we lost, the horrible things we faced that no parent should face. Don’t ask me to be grateful for that. Please. I wouldn’t wish prematurity or the NICU on my worst enemy. I’m grateful – my beautiful, precious miracle child survived. That is amazing. He is a joy. I am thankful and very aware our blessings. But dammit – nothing, no amount of time, takes away the scars from that experience.

IEP processed

Little Man’s annual IEP meeting was almost two weeks ago. It’s taken me a bit to process, mostly because I had other things going on…work, a trip to see my parents, Thanksgiving….I had to process it all anyways. I had to go back through the details, not in-the-moment.

Someone asked me about it, what happens, how did LM handle being in the meeting. I explained, “You spend the first five minutes hearing the ways your kid is amazing and how he’s improved. You spend the next hour discussing all his deficiencies, and making plans to help him.” Truth. That’s what goes on. You know what? I almost hate those first five minutes more than the rest of the meeting. Look, I know all the way he’s amazing. I have to make myself focus on those amazing qualities in the moments he’s completely falling apart, or pushing me over the edge, or having the mother of all meltdowns on the sideline of  his soccer game. He is amazing, brilliant, beautiful, witty, funny, empathetic, entertaining, cuddly, loving, and just….amazing. I’m his mom. I know this. I know they know his abilities, his strengths. It just always makes me feel like I’m holding my breath waiting for the “but…..”

So yes, he’s doing better with his collaborative work, although he still needs work. Yes, he’s very creative. Yes, he’s gotten better at communicating his needs. Yes, he has become a mentor to kids in younger grades working with the 3-D printer. His writing has improved. Can we please get to the hard stuff? The stuff we really need to talk about? The things we need to work out?

I knew he’d avoided going to class for some time when he was dealing with some bullying and then his perception of everyone around him – and their actions – went sideways. I didn’t realize he’d hardly been in class for nearly a month. His grades suffered accordingly – but WTH? Nearly a month not going to class? This is a small school with a small campus. There isn’t really anywhere for him to hide. I do know we dealt with the headaches and stomach-aches for over a week. I know he spent a good amount of time in the nurse’s office. But really, nearly a month hardly being in class, because he wouldn’t go. He ended up with two F’s, three C’s, and one A on his report card. My kids have NEVER gotten an F, much less two, on a progress report much less a report card.

The adaptive PE teacher on consult for him told us she’d have to hunt him down most days when it was time for PE. Again, WTH? They shouldn’t have to go look for my kid. He’s 13  years old.  He’s an 8th grader. The school is small, the campus is small, but you had to go look for him? Then he wouldn’t cooperate nor participate much of the time. So our PE goals remain intact. Get to PE, and participate to a percentage level.  He has a new sheet he has to fill out in which he earns points for showing up, participating in the activity, or running.

Most of his goals remain the same…..working cooperatively and successfully in groups, getting his work done, staying in the classroom, self-management, responding appropriately, stating verbally his feelings and needs, and showing up for and participating in PE.

I do feel like it is a team. We all want what’s best for him, and to best prepare him for high school and beyond. Then we had to start talking about the transition to high school. No, we haven’t decided where he’s going. We have narrowed it down to a few schools, one of which is very difficult to get into, one of which is lottery, and one of which is down the street.  The rep from the traditional school down the street was there towards the end. We had to talk about what potential issues he might face at that school.  PE is a big issue. I get massively twitchy when I think about it. I can’t picture him having to dress-out, in a locker room with a bunch of other, neurotypical 13 and 14 year old boys, can’t picture him participating, or possibly even showing up. I worry about him showing up for any class after the way this Fall has gone.  We won’t even discuss homework, or him staying in class, or him even looking like a typical student.  I just can’t.

I wasn’t entirely impressed with the HS rep. Her responses to some of our requests, and some of his particular issues, almost made it sound like she’d never had to manage or process a kid like mine. Didn’t give me much confidence. I know she won’t be directly involved in his day-to-day if he does go to that school.  We asked about preferential period selection for PE. She’d never heard of that before. We asked about supervision or a different changing location, or only changing his shirt rather than his entire outfit (he wears sweatpants most days anyways), and she responded as if no one had ever presented those options before.

Here’s the deal – he WILL get a full high school diploma. He’s capable. We will not settle for a certificate. That’s going to stand no matter where he goes to high school. Maybe that’s a lofty goal that is going to take a ton of work, a lot of meetings, and a billion emails and phone calls. Whatever it takes, it is going to happen.

So, back to the IEP meeting…..I left kind of numb. There was too much to think about, too much to process. There are many good things he’s done, many great ways he’s improved. There are many things he needs to work on. There are things to be concerned about. My stress over the high school selection, and how he does in high school is straight up through the roof.

One day at a time right? Be where we are, deal with where we are. What’s next will happen when it happens. How do I feel about this IEP meeting? Well, I’m good with the goals we set. I’m not sure how much success he will have achieving those goals within the next seven months, but that’s not really the point, right? The point is that they’re goals for him to work on, for us to help him work on, goals to help make him successful in school, in life. Good did come of it in that it led to good discussion, and Spouse was involved. We have had multiple discussions with Little Man.  He is mostly staying in class. We’re working on the rest. He’s a brilliant boy, with a brilliant mind. Someday, the world will be built for him, he will find his people, his corner of success in his way.

We have things to think about, more meetings down the road, particularly once we decide where he’s going to high school. For now, I’m going to take a deep breath, and be happy I don’t have to think about IEP’s for a little bit.

Almost forgot….How did Little Man do, participating in his own IEP for the first time? He didn’t want to go, and he did push back all the way up to the point of walking into the conference room. He didn’t say much, and we did have to tell him a few times to sit up, get his head off the table, but he was there. He didn’t yell, he didn’t complain, he didn’t growl.  He was there until we started talking with the high school rep and released him to go hang out with his friends at the lunch tables. He did it.

Dark Places

November is Prematurity Awareness Month. I’ve been participating in a 30-day photo challenge, with a list of photos from our NICU time….everything from photos of him with all his tubes, to his feedings, first outfits, and so on. It’s been something of an emotional haul, going back through his baby scrapbook and all the other photos we have from those 93 days. Most days these days, I can recall his early birth and NICU time without getting caught up in the horror of that time. I have a normal, healthy 17-year-old young man. I have much to be thankful for, and he miraculously came out the other side, so those bad memories can take a backseat for the most part.

Here’s the thing….once you’ve lived that, you’re changed forever. There are deep scars that remain. And once in awhile, something will happen…a song, a sound, a smell, a photo…will take me right back to that time. Once in a greater while, something will really get to me, and I go to those dark places I rarely allow myself to go. It’s like a punch to the gut, my breath catches, and my heart races with grief and fear.

Those dark places are pretty intense and painful.  I hate that I fully believed my son was already dead the minute I saw that toilet full of blood. I feel I’d lost faith in him, his life, his will to fight. It messes with my mind, brings up all the what-ifs, should haves, could haves, would haves.

I was away from him for five days following his birth. God those days haunt me. Logically, I know it was completely out of my control, and it could have been so much worse. There was one point, due to the need to properly treat the severity of my staph infection, the doctors discussed keeping me where I was for four weeks so they could monitor my recovery closely and administer the strong antibiotics I needed in a controlled environment. I can’t even imagine what that would have been like…four weeks locked up in that hospital, ten minutes away from my son’s hospital, unable to see him. As it was, five days nearly drove me insane. I wasn’t there for him. Spouse saw him, touched him, held him, knew how to find him in the NICU, knew his doctors, knew the routine, knew what our son’s face looked like. Spouse had to show me all of that when I did get out. I still feel guilt over that. Stupid guilt, yes, but guilt nonetheless.  I hate those five days. I hate how they make me feel when I let myself go to this particular dark place.

When I did get out of my hospital and went to his, they could have told me any boy in that NICU was mine and I would have believed them. I had only seen him for a few minutes before he was transported to his NICU. Most of his face was covered in tape. I hate knowing I wouldn’t have recognized my own child if  you’d lined up five boys in their isolettes in front of me.

I didn’t spend 93 days and nights in the NICU with  him. The world continued outside, and I was encouraged to take care of myself…..go home at night, get rest, do life as much as possible. I dreaded leaving him every evening. I hate that I left him to the care of doctors, nurses, and machines while I went home and did normal stuff….bought groceries, made meals, cleaned the house, fed the dogs and cats, watched tv, and slept. I hate that the world went on, that I participated in any “normal” while he lay there battling to live.

There was one point he was developing an infection of some sort. They needed to do a clean blood draw, and then transfuse him. I broke down and fell completely apart. He was maybe three weeks old. I’d only been in the NICU for a little over an hour that day, but I left. I couldn’t take it. I could see his tiny face, red with anger and hurt. I could hear his muted cry, and I couldn’t take it. I went home and just cried…I’d failed him again. I wasn’t there for him again.

See…..dark places. They, as much as anything else, are a part of premature birth. It is rare I let myself go to these dark places. They are my worst memories, my worst fears, my deepest pain from his prematurity. They shouldn’t matter anymore, shouldn’t affect me anymore, but they do……very rarely, but they do.

Of Epic Proportions

Little Man had his last soccer game of the season last night, a playoff game. He was doing as well as he does out there, running and attempting to be a help to his team. But then a ball glanced off his hand and the side of his face towards the end of the first half, and it went to total hell from there.

He dropped like a rock. The ball didn’t hit him that hard. I wasn’t worried at all about concussion or anything. It really had been more of a shave of the ball across the upper side of his head. But he went down, and wouldn’t get back up. I was about ten yards away from him on the sideline. I could see he was starting to cry. Spouse ended up hauling him off the field.

Little Man was crying. I’m sure he was angry and embarrassed, the actual pain minimal. He flopped to the ground when he reached the sideline.  I made him move as he was in the way of the sideline ref. He was pissed. A meltdown of epic proportions ensued.

It’s been a long time since he’s been that bad, in a public place. He screamed at me to not ask him stupid questions like where did the ball hit him and if he was okay. Oh yeah, I got mad right back. He didn’t stop there, moving on to yelling about being useless and worthless (speaking of himself). I just wanted it to stop. The parents around us were trying to not hear, were looking anywhere but at us. It sucked. It was mortifying. I needed him to stop yelling. I could feel my heart racing.

I felt bad for him, but I felt bad for us and everyone around us. If they didn’t know he was different before, they definitely realized it last night. I managed to keep my voice low and calm, but I did tell him he needed to just stop talking right now. It was awful. The yelling mostly stopped, but the tears continued, loudly. While I wanted to take him in my arms and hold him close to help soothe him, I also wanted to run away, wanted to be anywhere but there in that moment.

It felt like forever until he stopped. It was probably five minutes long in total, but time slows in those moments. He did end up going back into the game in the second half, and was laughing and talking with his teammates by games’ end (they lost so playoffs are done for them). I was a little bruised and it took me a bit longer to recover, aided by some wine when we got home.

In times like last night, I really hate what autism and all its accompanying diagnoses, does to my little boy. It sucks to see him hurt so much. It sucks to see the stares, or the attempts of others to avoid staring, like we’re a car accident they’re driving by. I hate how it wraps through his brain, making him think and say the worst things about himself. It makes me fearful, sad, and so angry.

His Perception

I had an impromptu meeting with Little Man’s principal yesterday afternoon during after-school pickup. It was positive – I know they have LM’s best interests at heart. As the principal put it, they’re “all hands on deck” for him, particularly now, given what’s gone on the last few weeks.

Little Man hasn’t been going to class. Lord knows what he has been doing, but he hasn’t been in his classrooms. We’re working to fix that. The problem is he’s sure anytime anyone laughs when he’s nearby, they’re laughing at him, making fun of him. His teachers, SAI, and the principal are trying to catch it in the moment so they can help him see it is his perception, not reality.

Little Man has always had this thing….if one “bad” thing happens during the day, then the entire day is the worst day ever. If something bad happens during a certain activity, then he’s sure it’s going to happen every single time he does that activity. If someone laughs at him once, then every time that person laughs, he’s laughing at him. That’s his perception, skewed as it may be. Our job is to help him see that’s not the case. It’s tough work.

We have to help him overcome his fears and worries. We have to help him understand his perception isn’t always the way it really is. We have to move him past this hurdle. But this is part of his autism. his reality. He perseverates, gets beyond anxious, then does everything he can to avoid whatever situation he’s worried about. In the meantime, his grades fall and he loses friends. It sucks.

He has to be ready for high school….moving between classes, staying in class the entire period, managing social situations that are unavoidable. We have to help get him ready for that, so we’re all utilizing some tough love to get him past this current hurdle. We’re back in a phase of being on high alert nearly every minute of every day.

As for Halloween, he had probably his best yet. He went out with his friend across the street. I was not with him. Normally, he taps out after about the fifth house. This year, he was out for over an hour, and made it all the way around the loop. Then he sat in the kitchen with Big Man and a bunch of high school boys, interacting and talking. At one point, he did get a bit overwhelmed. He just looked at me and said, “I’m getting anxious…it’s too much.” I got him to a quiet space for a few minutes, but he recovered quickly and then was right back, re-engaging, laughing and talking. Huge wins, all night long, for him.

The Other Side?

For the last few weeks, I’ve been haunted by fearful thoughts. If I’m honest, I’ve had these fearful thoughts for four years, ever since the first time Little Man told us life was too hard, hurt too much, and it would be better if he were dead. Once someone you love tells you those particular words, and has a plan for how to go about it, you never, ever forget. It’s always there. It can’t be un-said. It can’t be taken away.

We talk frequently about “getting him to the other side” of growing up, getting him to adulthood, when maybe he will better be able to use all his tools, when life and all that comes with being a kid/teen are just easier. I want so badly for life to be easier for him, or at least for him to be able to do it better, handle it better. I keep hearing if we can get him to that point, it will be easier. He will be more capable of processing, dealing, tolerating.

But can we get him to the other side? Ever since the first time he talked about ending his life, I can’t get past the fear we’re never going to get him there. Every time he gets in a dark place, I am terrified. What if it’s today? What if this thing is that last thing, the one thing that is just too much for him? I am fearful every day. It’s always there, even if I’m not specifically thinking about it, I can almost just feel this layer that won’t go away.

Can we get him to the other side? What is the likelihood? And what will it take to get him there? How many times do we have to go into emergency mode? How many phone calls will I get from school? We check in with his psychiatrist every six months. He has been and will be seeing a private therapist. We monitor medications and any changes that might need to be made. We make sure he knows how much we love him, how much our family needs him.  I’m always afraid it isn’t enough, and then sometimes I get angry when I worry it isn’t enough. Aren’t we enough for him to want to be here?

He is okay now. He’s come out of that place he was in a couple of weeks ago.  He’s smiling, laughing, engaged, content. His outbursts and meltdowns have gone back to normal level. His tears and depression have gone back to normal levels. But that level of fear in my heart remains.  Can we get him to the other side? What will it take to get him to the other side? Are we enough? Is what we’re doing enough? And will this fear ever go away?